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:) I got the final report from Mayo today 1 week after I left. I don't know what I expected, but coming back from OZ, more than I got. Dr. Low's 10 liner said that I didn't show that I had Potts on the tilt,,etc....but I take florinef, metopronol and 4 tabs of salt a day. I wouldn't it would show up. He did say that I have orthostatic intolerance. I think the evaluation I had here tilt etc was more accurate as my bp's were 60/30 etc. Plus I had no other substance in my body. There really was not a plan to follow just an opinion and a diagnosis. He didn't reiterate how much urine I needed for 24 hr test or the number for sodium, he told me but I can't remember. There were some other things EVERY specialist that I saw interpreted my medical records differently, so in their reports you couldn't be sure that it really was the way it happenned. Some things they found were helpful, those docs explained everything to me while I was there though. Soon we are going to be able to bottle my whine!!!!!! I spent 2 weeks 15,000 in ins money and close to 2 of ours and I still don't feel any smarter. not smarter visable. Will bottle this whine for now. I'm going to go listen to music or something. Miriam
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dear miriam-i also got a very vague reply form mayo, but they did change some of my meds. i know how annoying that is to be that way, i was there for almost two weeks and i know we spent nearly $1500 ourselves, i have know idea about ins. claims, we had to pay for most of our motel, but we drove there and then used the bus as much as possible, we even cooked alot of our own dinners and stuff. we took a hot plate and a combo griddle and crockpot type thing, to cook with, i'm sure we saved money as we bought most of our food in south dakota before heading into rochester. please feel free to vent all you want, we need to keep our stress level down.

rest and i hope you feel better soon.

blackwolf

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Miriam--

I'm sorry to hear your frustration, especially since I'm headed there tomorrow!

Actually, your experience and suggestions from others have got me in a determined state!

Blackwolf... we purposely got hotel with free hot breakfast, free wireless DSL in room, and room with kitchenette... we're going to try and keep expenses down by eating in a lot, too. Besides, I doubt after the "tilt-a-whirls," as Miriam so best put them, I'll feel like eating much.

Miriam, hope you can put it all together into something more meaningful... can you have a local doc call up there and get more detail? Or call yourself?

Hey, put all of your well-earned "whine" in the bottle, on the shelf and someday it'll be good stuff! :)

Ginger

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Guest tearose

I am so sorry Miriam!

It is so frustrating after all the energy and time you put into this. I really do think that Mayo is only equipped to do the diagnosis. To support you after you need a good local medical team. If you think they omitted a test you would have benefited from, tell them. They will help you find someone close that may be able to do the test. You may need to go back out there. I know this stinks because we get put thru the mill with all this, we wonder why couldn't they have done this while I was there???

Gosh, I hope they started you out in the Neurology Department. Did they? I just remembered that this is also vital. You get a different "label" if you begin somewhere else. You can still have a good ANS workup but you must have a Neurologist to oversee your case. Anyway, let's pull things together and get you to a better place...

Please read thru the report with your favorite local doctor and make a list of questions. Then you call out to Mayo and you'll have to leave a message for your main doctor to call you back. After you have your follow up questions answered, think of any new ones. Then have your local doctor call and finish the circle of questions.

From my understanding having a new dx of orthostatic intolerance is a positive sign for you. OI is easier to treat in many people! Maybe your body is getting stronger is some ways! Wouldn't it be a welcome miracle for you to have improvement!!! You may be able to have real wine real soon! Keep the faith, there is always hope!

best regards, tearose

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I am so sorry Miriam!

It is so frustrating after all the energy and time you put into this.  I really do think that Mayo is only equipped to do the diagnosis.  To support you after you need a good local medical team.  If you think they omitted a test you would have benefited from, tell them.  They will help you find someone close that may be able to do the test.  You may need to go back out there.  I know this stinks because we get put thru the mill with all this, we wonder why couldn't they have done this while I was there???

Gosh, I hope they started you out in the Neurology Department.  Did they?  I just remembered that this is also vital.  You get a different "label" if you begin somewhere else.  You can still have a good ANS workup but you must have a Neurologist to oversee your case.  Anyway, let's pull things together and get you to a better place...

Please read thru the report with your favorite local doctor and make a list of questions.  Then you call out to Mayo and you'll have to leave a message for your main doctor to call you back.  After you have your follow up questions answered, think of any new ones.  Then have your local doctor call and finish the circle of questions. 

From my understanding having a new dx of orthostatic intolerance is a positive sign for you.  OI is easier to treat in many people!  Maybe your body is getting stronger is some ways!  Wouldn't it be a welcome miracle for you to have improvement!!!  You may be able to have real wine real soon!  Keep the faith,  there is always hope!

best regards,  tearose

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I am so sorry Miriam!

It is so frustrating after all the energy and time you put into this.? I really do think that Mayo is only equipped to do the diagnosis.? To support you after you need a good local medical team.?  If you think they omitted a test you would have benefited from, tell them.? They will help you find someone close that may be able to do the test.? You may need to go back out there.? I know this stinks because we get put thru the mill with all this, we wonder why couldn't they have done this while I was there???

Gosh, I hope they started you out in the Neurology Department.? Did they?? I just remembered that this is also vital.? You get a different "label" if you begin somewhere else.? You can still have a good ANS workup but you must have a Neurologist to oversee your case.? Anyway, let's pull things together and get you to a better place...

Please read thru the report with your favorite local doctor and make a list of questions.? Then you call out to Mayo and you'll have to leave a message for your main doctor to call you back.? After you have your follow up questions answered, think of any new ones.? Then have your local doctor call and finish the circle of questions.?

From my understanding having a new dx of orthostatic intolerance is a positive sign for you.? OI is easier to treat in many people!? Maybe your body is getting stronger is some ways!? Wouldn't it be a welcome miracle for you to have improvement!!!? You may be able to have real wine real soon!? Keep the faith,? there is always hope!

best regards,?  tearose

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I am so sorry Miriam!

It is so frustrating after all the energy and time you put into this.? I really do think that Mayo is only equipped to do the diagnosis.? To support you after you need a good local medical team.?? If you think they omitted a test you would have benefited from, tell them.? They will help you find someone close that may be able to do the test.? You may need to go back out there.? I know this stinks because we get put thru the mill with all this, we wonder why couldn't they have done this while I was there???

Gosh, I hope they started you out in the Neurology Department.? Did they?? I just remembered that this is also vital.? You get a different "label" if you begin somewhere else.? You can still have a good ANS workup but you must have a Neurologist to oversee your case.? Anyway, let's pull things together and get you to a better place...

Please read thru the report with your favorite local doctor and make a list of questions.? Then you call out to Mayo and you'll have to leave a message for your main doctor to call you back.? After you have your follow up questions answered, think of any new ones.? Then have your local doctor call and finish the circle of questions.?

From my understanding having a new dx of orthostatic intolerance is a positive sign for you.? OI is easier to treat in many people!? Maybe your body is getting stronger is some ways!? Wouldn't it be a welcome miracle for you to have improvement!!!? You may be able to have real wine real soon!? Keep the faith,? there is always hope!

best regards,?? tearose

[/quotI

What I still don't understand is can these tests can be accurate with all the equalizing meds in me????????????????????????????

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Miriam,

Sorry for your frustration. I think that Mayo should ask us to stop all meds before going there. Of course a beta blocker would affect tilt test results! I went there in Sept. and asked them if I should stop my meds and they said no. I am very glad that I went there, because I didn't have the confidence in my docs here at home. So for me it was worth going all the way out there to hear the same diagnosis from the horse's mouth (Dr. Low).

I love Mayo and I would personally go back to their state-of-the-art facilities in a heartbeat if I ever had a serious medical problem. I would recommend it to others too, but wouldn't push so hard about this because I can see how the place is also very frustrating....

-Rita

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Miriam--

I'm sorry to hear your frustration, especially since I'm headed there tomorrow!

Actually, your experience and suggestions from others have got me in a determined state!

Blackwolf... we purposely got hotel with free hot breakfast, free wireless DSL in room, and room with kitchenette... we're going to try and keep expenses down by eating in a lot, too. Besides, I doubt after the "tilt-a-whirls," as Miriam so best put them, I'll feel like eating much.

Miriam, hope you can put it all together into something more meaningful... can you have a local doc call up there and get more detail? Or call yourself?

Hey, put all of your well-earned "whine" in the bottle, on the shelf and someday it'll be good stuff!  :)

Ginger

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Miriam--

I'm sorry to hear your frustration, especially since I'm headed there tomorrow!

Actually, your experience and suggestions from others have got me in a determined state!

Blackwolf... we purposely got hotel with free hot breakfast, free wireless DSL in room, and room with kitchenette... we're going to try and keep expenses down by eating in a lot, too. Besides, I doubt after the "tilt-a-whirls," as Miriam so best put them, I'll feel like eating much.

Miriam, hope you can put it all together into something more meaningful... can you have a local doc call up there and get more detail? Or call yourself?

Hey, put all of your well-earned "whine" in the bottle, on the shelf and someday it'll be good stuff!  :)

Ginger

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Miriam--

I'm sorry to hear your frustration, especially since I'm headed there tomorrow!

Actually, your experience and suggestions from others have got me in a determined state!

Blackwolf... we purposely got hotel with free hot breakfast, free wireless DSL in room, and room with kitchenette... we're going to try and keep expenses down by eating in a lot, too. Besides, I doubt after the "tilt-a-whirls," as Miriam so best put them, I'll feel like eating much.

Miriam, hope you can put it all together into something more meaningful... can you have a local doc call up there and get more detail? Or call yourself?

Hey, put all of your well-earned "whine" in the bottle, on the shelf and someday it'll be good stuff!? :)

Ginger

I just want to know from dr. low "how accurate these tests are" when you are on a full compliment of medicines ?????????????????????????????????????

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It seems really strange that the testing would be done while on medication. Why do testing if meds are suppressing your response? What would the reasoning be for that? Were they determining whether or not the meds you are on were effective in controlling the POTS symptoms? Do you think maybe they test you with meds in your system to determine if they are really working or if you need to try new medications? I hope you can find an answer for all of this! Laura

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Hi M9riam,

I am sorry that your testing were not done according to the protocols.

Taking medications that controls your symptoms DO make a difference. For every tilt I did I had to stop my meds at least 24 hours ahead. The only time I was on meds was not for diagnosis but to test the efficiency of the meds to stop my fainting.

So I would think that if he says that you don't seem to have POTS on the tilt it means that you don't seem to have symptoms of POTS while taking these specific medication.

Ernie

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I agree I just googled "pots" and there was an article on tilt table testing-- they wewe even wary of people with diabetes taking their insulin prior to the test. My major let down is that I was diagnosed with severe pots, I.V. at home every week, ER reguarly... This was supposed to helpmy docrors here know what next to do!!!!!! That was my reason to go. I still am doing what I had before, but we don't know the next step. Might check out a NIH study. Heard they treat you well, and its free. Miriam

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Miriam, I'm really sorry. This was not good.

I read (I think it was in The Dysautonomia Survival Guide?) that testing should not be done on a medicated patient.

Why on EARTH does anyone test for POTS while meds are being taken?

Sending a hug your way...

(((((((((())))))))))

I'll be looking for updates.

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I am sure it depends somewhat on the meds you are taking and the tests you are having. I think there are some tests which aren't affected by the meds, like the sweat test. If you aren't sweating properly, I am not sure any meds can fix this. But others like the tilt test don't make sense to take on the meds. I asked the nurses/technicians at Mayo and they said about 1/2 the people take the tests with meds, and 1/2 without. They said that for those with meds, the doctors want to see how well your condition is being managed with the meds. Doesn't make much sense to me. If our condition was so great, why would we bother hauling all the way out to Mayo in the first place? If I could do it over again, I would have gone off my meds on my own even tho Mayo told me not to.

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Sorry about your visit!! I can not believe they did not have you stop meds before tilt. They must of been wanting to see how you are doing on the meds. But this is not very accurate. I can do well for a while then very poorly with no change in meds. This is disappointing. Iwould of been nice to get some info and possible medication changes. It ***** having to prove ourselves.

Thinking of you!

Dawn Anich

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I was on Florinef when I went to Mayo. In my case it was good that I was on it while being tested because the Florief was messing me up. I wouldn't have known not to take it if I hadn't gone to Mayo.

I agree, the follow up is not good. They need to do something better with that. I also would have found it helpful if they had recommended a local doctor. On the other hand not every city has a doctor who gets dysuatonomia so I guess they can't refer when no referral exists.

That said I'm still glad I went to Mayo because I finally got the correct diagnosis.

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So sorry to hear of your terrible lack of info. I guess I am just perplexed as to why Dr. Low tilted you while still on your meds? When he tilted me, all I was on was Lexapro at the time, and he made me stop taking it for 48 hours before the tilt and the sweat test, chetacholamines, etc. Are you sure he was completely aware that you had taken them? Did you tell him yourself?

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